She never seemed shattered; to me, she was a breath taking mosaic of the battles she’s won.”
Nicole Munoz is a Hodgkin’s Lymphoma and Ewing’s Sarcoma Survivor. She is AYA (adolescents and young adults) Cancer Voice/Advocate. She also runs an amazing blog by the name, “crazy cancer lady”.
“Hodgkin’s Lymphoma: January 2009, age 16. Diagnosed after having severe chest pains. Discovered a tumour in my chest that was later confirmed as HL stage 3b in the abdomen, chest, neck, and face.
Ewing’s Sarcoma: October 2015, age 23. Diagnosed after having my stomach extending. Initially misdiagnosed as a 5 & 1/2 month pregnancy. Instead, a very large tumour was found attached to my uterus and other organs in that area. I had to have a total abdominal hysterectomy in order to remove a tumour safely, leaving me infertile. It was confirmed as Uterine Ewing’s Sarcoma, a very rare case with not many cases out there.”
“My journey with cancer was difficult, but it gave me such an appreciation for life. When you almost lose your life you realize how quickly it can be taken away and how valuable time is. I still have my moments of sadness and I am still discovering myself after having two cancers, but every day is truly a gift.”
Hodgkin’s Lymphoma – January 2009 to June 2009
“My journey with HL began Thanksgiving Day in 2008 and I did not even know it. I started having severe chest pains and had to miss the holiday to spend it in the ER. After a long visit, I was diagnosed with pleurisy (a chest infection) and given steroids.
The steroids took the chest pains away and I felt back to my normal 16-year old self until January 2009. The pains returned in the same spot but they were much more intense. I also could not hold any food down. I returned to the emergency room and they began testing, thinking I possibly had a blood clot in my chest. When that was ruled out, they continued testing and found a large mass in my chest that was also crushing my esophagus.
The pain stemmed from the mass and I could not hold food down due to the mass blocking it from being digested. I was admitted and the doctor came to tell my parents and me that there was a chance I could have lymphoma. I had NO IDEA what lymphoma was at the time, so when he then said cancer we were shocked.
I was transferred to Advocate Children’s Hospital in Oak Lawn, IL (then called Hope Children’s Hospital) because they had an oncology unit there that could better assess and diagnose me. A lymph node biopsy was needed to determine if it was lymphoma. We first did a chest biopsy but unfortunately, that came back inconclusive due to the steroids I took back for the initial misdiagnosis of pleurisy.
A few days later we did a neck biopsy that was successful. On January 27th, 2009 I was officially diagnosed with Hodgkin’s Lymphoma Stage 3b in the stomach, chest, neck, and face (sinus area). The treatment plan included 3 cycles of chemotherapy followed by 28 sessions of radiation. The tumor in my chest was still present and my team decided not to operate on it and let chemo shrink and break it up.
The surgery was too risky and required a large incision and recovery. If we needed to do it down the road we would, but luckily that was not necessary. HL is one of the cancers out there that is very treatable and has a successful cure rate, however, treatment needed to happen ASAP and the chemotherapy was very physically intense.
I was given information, had my PICC line inserted, and prepped for this huge event in my life. I had to miss the second semester of my junior year of high school, but I did work when I was feeling well enough and caught up in time to go back to start my senior year. I immediately reacted to the chemo and experienced just about every side effect I was told would happen: hair loss, body pain, weight loss, nausea/vomiting, immunodeficiency, mouth sores, fatigue, etc. I ended up admitted to the hospital after each round due to catching a fever.
Radiation was much easier on my body. 14 sessions were done to my stomach and chest at the same time and then 14 sessions were done to my neck and face at the same time. The main side effects I dealt with was fatigue and nausea. I finished my last radiation session and went into remission on June 26th, 2009.”
Ewing’s Sarcoma – October 2015 to October 2016
“I went into surgery to have my hysterectomy on October 2nd, 2015. Dr. G was also a surgeon and I was so grateful that he performed the surgery. The prep was absolutely terrible, my vein/IV blew out right before I was heading into the operating room, and I was all sorts of nervous/anxious/sad/etc.
What scared me the most was how rare this tumor was, my doctor had never seen anything like this and I really did not know what to expect. Surgery was expected to take 2 hours and it took over 4. The mass was huge (18cm) and extended my cervix like a 5 & 1/2 month fetus would, which is why I looked pregnant (pics of my tumor are in my blog post about my hysterectomy if you are interested).
Since it had attached itself onto other organs in my body, he also had to work around that and cut some of them and put them back together. I had many friends and family in the waiting room and they were just as nervous as I was. When I started to wake up, the first thing I asked my friend (which I don’t remember because of all the drugs) was if they were able to save my ovaries. I did not get the answer I was hoping for.
My ovaries would have needed to stay in place for 6 weeks for the freezing process, but it was too risky. I would never have a child using my own eggs. The complete term for my procedure was a total abdominal hysterectomy (meaning they cut open my stomach to perform the surgery) and bilateral salpingo-oophorectomy.
In simpler terms, everything was removed: uterus, cervix, fallopian tubes, and ovaries. I also had lymph nodes removed, stated in my medical notes as pelvic and periaortic node dissection.”
My team decided to follow the standard protocol for Ewing’s with the exception of doing the surgery first. So I had 17 straight cycles of chemotherapy ahead of me, wondering if it was even going to work for a case like mine.
This cancer diagnosis came when I was an adult, so I did have the choice to not do treatment. And I’m not going to lie, I considered it. Since the cancerous tumor was removed from my body and there were no signs of cancer to the naked eye, I had the choice to leave it at that and see what happens.
However, there could be a microscopic piece left there and I did not want to take that chance of having such rare cancer grow back. So I made the choice to go through the chemo, and I am beyond blessed that the treatment protocol worked for my rare case.”
Motivation to fight cancer
“I knew deep down it was not my time to leave. I have things to do, people to be here for, and dreams to chase! “
“Depression and losing my fertility.”
Message to other cancer patients
“Always remember that YOU have cancer, cancer DOES NOT have you!”